When I’m Gone

August 20, 2018

For five days, I thought I was dying.

It turned out that I wasn’t dying; but during those five days when I thought I was, all of the “What Ifs” started running through my mind. What if I was really sick? What if I needed to get chemo and radiation? What if all of my hair fell out? What if I became too sick to take care of my kids? What IF I died, and was no longer here to look after my children?

It’s funny how one little abnormal test can really mess with a person’s mind. And I admit that maybe I am a *little* bit of a hypochondriac, and my reaction was probably a little bit drastic. But I’m not going to lie. It’s something I think about all of the time.

What will happen to my children when I’m gone?

It’s Different For Them

My “neurotypical” daughter, who is seventeen, is about to enter her last year in high school. After graduation, she plans to move away to whatever college she chooses to attend. She will get a job, live in her own place, and will start living her own life as an adult. Without me.

For my three autistic sons, though, the story is different. None of them will go away to college. They will all eventually have some type of job – but that will look differently for each one of them, and will likely be supported employment. They will all eventually be in some type of supported living environment; never living fully independent.

It’s one of those things that I think about constantly: my nest, and the fact that it may never empty completely. It was also something that I didn’t really think about too much until my children started growing up, and two of those children started approaching adulthood.

The Moment it Hit Me

Sitting in an IEP meeting one time at school for my oldest son, the team of school professionals – along with my son and me – sat around a table discussing my son’s future. One of his teachers piped up. “I see him living in a group home setting,” she said. The others nodded their heads in agreement.

On the way home, my son broke down, crying. Before he even said anything, I knew what was bothering him; the same thing that was bothering me. “I don’t want to live in a group home, Mom,” he said. Through my own tears, I assured him that I was on his side, and that I would never make a decision that impacted his life without discussing it with him first. So if he didn’t want to live in a group home, I wouldn’t make him move into a group home.

Not long after that meeting, I was having a conversation with another special needs parent about the same topic: where our children would end up as adults. I told her that my sons would likely live with me “forever.” She, however, had a different perspective. There was a high likelihood that her son would outlive his parents. So the chances that he would eventually have to move on to some type of supported living was pretty high.

Sooner or Later, They Will Have to Live Without Me

Sooner or later, she pointed out, her adult child with special needs would have to learn how to live a life without his parents in it. It was more of a matter of when that would happen. Do you let them live with you until you die and then throw them into the world as older adults, or do you let them transition while you are still living, and are still able to be actively involved in their lives no matter where they live?

And in that instant, I imagined my sons, all in their 50’s or 60’s, suddenly being all alone because I had kept them with me until my death; and I thought, maybe keeping them with me forever is kind of selfish on my part.

People with special needs can be and often are more vulnerable to being taken advantage of. I have seen it firsthand, and trust me; it is hard knowing that there is always the possibility of it happening. But like it or not, they will likely outlive me; and I will have to trust that someone will always look out for them, long after I can’t.

No Matter What, I Will Believe They Will Be Okay

It doesn’t mean that it isn’t scary to me; because it most definitely is. Am I always going to worry about them? Yes, even if they are all still living with me. But then again, the thought of me dying and leaving it up to someone else to decide something that may not necessarily be in my sons’ best interests, or even what they want; worries me even more.

So keeping them with me until I die might be a little bit selfish, even if my intentions are good. Has it ever been about me? No. It has been about my sons and making decisions that are in their best interests; not mine. And yes, this very well might mean letting go enough to help them transition to a more independent life, while I am still alive to help them do it.

Whatever happens, I have to trust; and believe that they will be okay. And as long as I’m living, that’s what I’ll do.